WAYS TO GIVE

MUSIC FEST FOR MS Crown Hill Cemetery located near downtown Indianapolis is one of the largest cemeteries in the United States. But on October 11 it will be transformed into something very different.

The Music Fest for MS at Crown Hill is an event featuring notable jazz, gospel and soul music acts, and all proceeds will benefit the fight against MS.

This event is just one of many Do It Yourself

FALL 2015 INDIANA STATE CHAPTER

MS CONNECTION NEWSLETTER(DIY) events held across Indiana to help the National MS Society-Indiana State Chapter fund research and critical programs and services to assist the more than 8,000 Hoosiers living with MS.

“We were looking for a way to bring the community together at the beautiful Crown Hill for a life-filled event, instead of a sorrowful one,” said Michelle Bailey Harris, Crown Hill Community Service Organizer. “This is a great way to raise awareness of multiple sclerosis and rally together to end MS forever.”

The music fest will feature music acts such as Voices of Light, Jennie De Voe, Jerome Mills Blues Band, Tola Lewis and many more. The music fest will take place October 11 from 2:30 P.M. to 6:30 P.M. and food and drinks will be available for purchase.

To buy tickets and find more information about the event, visit musicfestforms.com, or tickets can be purchased upon entry to the music fest.

If you have an innovative idea for a DIY event in partnership with the National MS Society, we encourage you to visit www.nationalmssociety.org/INI and click on “Fundraising Events,” “DIY Fundraising Events,” and “Get Started” or call 1-800-344-4867 to learn more.

02 MS CONNECTION: FALL 2015

NATIONAL MULTIPLE SCLEROSIS SOCIETY Indiana State Chapter 3500 DePauw Boulevard, Suite 1040 Indianapolis, Indiana 46268 1-800-344-4867

CONNECT WITH US ONLINE:Indiana State Chapter www.nationalMSsociety.org/ini indiana@nmss.org

Like us: www.facebook.com/na-tionalMSsocietyindianastatechapter

Follow us: @NMSSIndiana

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

© 2015 National Multiple Sclerosis Society, Indiana State Chapter.

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PROGRAMS & SERVICES

MOVING FORWARD CELEBRATION OCT. 24 Research suggests that wellness and lifestyle decisions play a significant role in the symptom management of MS. In fact, recent research results presented at the 2015 Annual Meeting of the Consortium of MS Centers (CMSC) included the importance of promoting wellness, healthy eating and physical fitness for those living with MS.

However, there is still a lot to learn about the role of diet, exercise and emotional/cognitive health and new evidence of their importance is constantly emerging.

To give Hoosiers affected by MS an insight into the importance of wellness and how to implement healthy habits into their lives, this year’s Moving Forward celebration will focus on wellness.

Moving Forward will be held on Saturday, October 24 from 1:30 to 5:00 p.m. at the Marten House Hotel & Lilly Conference Center. The celebration will include breakout sessions for a variety of volunteer groups and a resource fair specifically geared toward the

multiple sclerosis community.

In addition, the annual meeting portion of the event will provide Chapter constituents the opportunity to vote on the Board of Trustees, and the keynote speaker will be Mary Kay Fink. Fink is an Advanced Practice Nurse at The MS Center of St. Louis at Mercy-St. Louis, and will discuss the importance of wellness when living with MS. Fink is committed to enhancing the role of nursing and advanced practice nursing in care of those living with MS.

The Chapter will also present five MS Superstar Awards—Nurse of the Year, Physician of the Year, Volunteer of the Year, Business Supporter of the Year and Employer of the Year.

Be sure to watch your mailbox or visit www.nationalMSsociety.org/INI for more information about Moving Forward and how to nominate someone for an MS Superstar Award. In addition, if you would like to nominate someone to the Chapter Board of Trustees, submit resumes to Leigh Ann Erickson, Chapter President, by October 9 to leighann.erickson@nmss.org.

04 MS CONNECTION: FALL 2015

RESEARCH

FINDING ANSWERS TO PROGRESSIVE MSBY DOUGLAS LANDSMAN, PHD

People who live with progressive multiple sclerosis have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at the American Academy of Neurology’s Annual Meeting in April, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS.

Several groups presented updates on large, ongoing studies involving people living with primary-progressive MS, including:

• a study of oral laquinimod, an experimental immunomodulator, in 375 people with primary-progressive MS (www.clinicaltrials.gov/ct2/show/NCT02284568);

• a clinical trial of oral ibudilast, an anti-inflammatory enzyme, in 250 people with primary- or secondary-progressive MS (www.clinicaltrials.gov/ct2/show/NCT01982942);

• a study of ocrelizumab, an antibody cousin of rituximab delivered by infusion, in 740

MS RESEARCHERS ARE MAKING PROGRESS

people with primary-progressive MS (www.clinicaltrials.gov/ct2/show/NCT01194570).

No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way.

AN EARLY STARTWhile it may seem counter-intuitive, scientists need to sometimes test treatments for progressive MS in people with very early signs of the disease, such as optic neuritis, an inflammation of the optic (eye) nerve that is often the first symptom of MS, before progression is even evident. They do this because the nerve damage — and if successful, the repair or protection from damage — is more easily observed in this single location.That brings us to exciting results from a trial led by Dr. Raju Kapoor (University College London), which recruited 86 people with optic neuritis.

They were randomly assigned to receive either

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phenytoin — an FDA-approved oral therapy used to treat epilepsy — or a placebo for three months to assess whether the phenytoin could help to protect the retinal nerve fiber layer at the back of the eye from damage. Of those completing the study, on average, people who received phenytoin had 30 percent less damage to the nerve fiber layer compared to those who received placebo.

The results raise the possibility of “repurposing” a therapy already on the market with a long track record of use. We need to confirm these results in a larger study to really understand if phenytoin can truly protect the nervous system from damage that leads to MS progression.

DIGGING DEEPERIn another study, 154 people with primary- or secondary-progressive MS were given experimental MD1003 (concentrated biotin, a B vitamin), or an inactive placebo, for 48 weeks. The results showed that 12.6 percent of those given MD1003 showed improvement in disability, versus none of those on placebo, and there were no serious safety issues reported.

More research is needed to figure out who might benefit from this approach and why only 12.6 percent responded. The manufacturer, MedDay Pharma, says that another trial is underway in people with MS and results are expected later this year.

Finally, I was impressed with a study from Dr. Mika Komori and a team at the National Institutes of Health that looked “behind the scenes” to try and better understand why immune-modulating treatments have not been successful in progressive forms of MS as they have been in relapsing MS. The team examined spinal fluid samples from 386 people with all types of MS, as well as people without MS, to determine the exact numbers and characteristics of various immune cells.

What they observed is that attacking immune cells in people with progressive MS were more likely to be holed up in the brain and spinal cord, whereas the cells in people with relapsing forms were mobile and circulating. What does this mean? It may be that, for treatments to succeed at modulating inflammation and/or nerve damage in progressive MS, the therapies will have to be able to track the bad cells within the central nervous system.

Dr. Douglas Landsman is associate vice president, Biomedical Research at the National MS Society.

Originally published at www.MSconnection.org/blog.

06 MS CONNECTION: FALL 2015

LIVING WITH MS

(NOT) THE SOUND OF MUSIC BY MICHAEL WENTINK “Are you claustrophobic?” asks the radiologist.

I awkwardly respond, “No, I’m not ...”

As I walk down the hallway and into the room with the MRI machine, I ponder … does another scenario exist where that is the opening question from someone I’ve never met before?

Magnetic Resonance Imaging (better known as MRI) is an annual ritual to be endured by most individuals with multiple sclerosis. The machine, which weighs over 11 tons, takes pictures of the lesions on my brain, neck and spine, which my neurologist then uses to evaluate the progression of my MS.

The truth is, I am claustrophobic. But really, is there anyone who enjoys having his or her entire body in a tube — just big enough to fit your frame — for two hours? For previous MRIs, I took a sedative, which made me drowsy enough to fall asleep, even amid the loud, torturous sounds of the scanning process.

But this time, an “open” (i.e., no skinny tube) MRI was scheduled; however, when I arrive

MICHAEL WENTINK WAS DIAGNOSED WITH MS IN 2008

the MRI tech tells me that the quality of an open MRI scan doesn’t meet the standards for MS patients. I nod my understanding while struggling to hide my disappointment.

After answering a few additional questions and changing into a hospital gown, the process begins. I lay in the cylinder, my legs slightly elevated by a pillow and my head held in place by a cage-like helmet. A mirror is strategically placed within the headpiece so I can see out of the tube.

I wear headphones that the radiologist uses to communicate updates or reminders to remain as still as possible. He briefs me on how to use the panic button, should it be necessary. As the MRI starts, I’m distracted by seeing my eyebrows in the mirror. One long, stray hair is protruding. Annoyed, I make a mental note to take care of it later.

The noises begin to swell from the machine. They change rather frequently.

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There’s what sounds like rapid machine gunfire, then there’s the construction zone phase, which is followed by various other loud, jarring noises. As my senses adjust to the chaos, several random thoughts pop into my head, including:

After “The Wizard of Oz” came out, did parents who lived in Kansas stop naming their daughters Dorothy?

Does a woman who is born on Valentine’s Day get jilted with “combo” presents the same way people who are born on Christmas do?

Medically speaking, do people tend to itch more when they know they can’t scratch it?

If the intention is to reduce stress, can’t they think of a better name than “panic button”?

I wonder, why am I thinking these things? I’ve never even watched “The Wizard of Oz”! Music from the radio also plays through the headphones. Unfortunately, most of the songs are marred by the loud noises.

Suddenly, there is moment of silence and, as if on a cruel (and ironic) cue, Celine Dion belts out “All By Myself ” — the timing is perfect. I almost start laughing.

I wonder, did the radiologist plan that? I then realize that he is back in the room and I am exiting the tube. As is standard, a dye is then injected into my arm and I go back in to the machine.

It’s a cruel tease, even though I knew to expect it. The radiologist informs me I have a “solid

half hour” left. I politely thank him while musing over his choice of the adjective “solid.”

I start to fantasize about breaking free and making a run for it and wonder how my wife, who is in the waiting room, would react to seeing a flash of me in a hospital gown sprinting out the door as I make my escape.

What seems like an eternity has passed and the radiologist informs me I have 12 minutes left. I challenge myself to count down these final moments. Twelve 60-second intervals, how difficult can that be?

I count well past what I think is 720 seconds and disappointment sets in as sounds of the apocalypse continue to blare in my face. I worry that I misheard the number “12” and then suddenly, it ends.

The room is now silent. My body slowly glides out of the tube and the helmet is removed. Overcome with jubilation, I resist the urge to give the radiologist a hug.

Thoughts of William Wallace in “Braveheart” screaming “Freeedomm!” dance in my mind as another annual MRI is now complete. n

Michael Wentink was diagnosed with MS in 2008. Read more of his writing at www.mjwentink.com.

Originally published at www.MSconnection.org/blog.

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Indianapolis, INPermit #1854

3500 DePauw Boulevard, Suite 1040 Indianapolis, Indiana 46268

PROFESSIONAL EDUCATION

CHAPTER TO HOST FREE FROM FALLS WORKSHOP The National Multiple Sclerosis Society - Indiana State Chapter will be hosting a comprehensive fall prevention program designed specifically for those living with MS who are able to walk, but may be at risk for falling.

Unfortunately, falls are quite common for those living with MS, but there are things you can do to prevent injuries.

As a result of this workshop individuals will:

• Gain an increased awareness of what can contribute to falls

• Identify strategies to prevent falls in the home and in the community

• Engage in and develop a fitness plan to improve balance, endurance, strength and mobility to reduce fall risk

• Increase confidence to avoid falls and manage falls if they do occur

The workshop will take place October 28, from 1:00 P.M. to 5:00 P.M. in the Pyramids Conference Center on the North Side of Indianapolis.

Space is limited so please call 1-800-344-4867 to see if Free From Falls is right for you.